14 MONTHS LATER!

No.....life is not fair! There are so many people out there just 'living to die'....and my grandson is 'dying to live'! How fair is that? When my brother of 51 was dying with lung cancer....he said....'you know...I worked hard to get it....I asked for it....and I earned it.' But he also said...what he felt was so unfair...was that kid's got cancer and they didn't choose it!

Several weeks ago, when I took my grandson for his usual check-up and blood work, the doctors found that he needed a liver biopsy as his iron levels were high. When they did the bloodwork...they saw that his counts weren't good. His platelets had dropped. They scheduled 2 bone marrow aspirations, one week apart .....and found that the cancer cells were back!
They told us to come back on Tuesday, August 21st so that Mister T can have another bone marrow aspiration as well as a lumbar puncture. We will be staying at Cheo for the next few months.
The plan is to try to get him into remission once again....and then we will travel to Toronto Sick kids hospital for a bone marrow transplant....if they can find a matching blood marrow donor. His name is already entered into the bone marrow registry.. I'm sure they will find a donor.....medical technology has come a long way.

In order for my grandson to get better.....he will get worse. Today I look at him...and he looks like the picture of health. He is brown from long summer days of swimming and fishing and has grown a few inches in the past few months.....and his appetite is ginormous! I am not looking forward to see him getting sick again. And he will. Chemo is not for the faint of heart.
Although I hate to leave my home and my granddaughter...I have no choice. Neither does Mister T.

He was so excited about going to high school this year with his buddies. Last month we went to visit his high school, meet the principal and teachers, and get an idea what his school year would be like. He was so excited to find out he would have basketball, football, dodgeball and guitar as well as drama.
He was also looking forward to our county fair in late August for 4 days....the rides, the games, the excitement.

He doesn't understand why he should go through this ordeal again.....and neither do I. I have sat down with him and explained to him in nanny-talk...why we have to go through this again.

I used the analogy of his bicycle. Many times his inner tube on his bike had to be changed or patched...although we patched it up a few times. ...eventually we had to buy him a new inner tube. I told him....that chemo was the same thing. First they try to patch your body using chemo....but just like your tube on your bike....eventually you need a new tube...the old one just won't do. Same with your bone marrow...if chemo doesn't work....then you need to get a bone marrow transplant...and you'll be good as new!

Well it sounds good to me! And he has complete faith in me....and I told him I have faith in the doctors & the medical team....they are professional...they know what they're doing...they've done this many times. And I've assured him that even though he may not start school with his friends....that he will keep up his school work with a tutor at the hospital. He will get his homework sent by computer....he will get a loan of a computer at Cheo just for that purpose...so that when he comes home he can start back in school without missing a beat.

His only question was...."Will you stay with me, Nanny?" and I said..."for as long as it takes...till you get well....and we'll come home together!"

We won't always stay at Cheo...if Tayten is having a few good days...when he's not on chemo...they will allow him to come stay with me at Mcdonald house, (which is 1 block away) and thats when I can get his sister to come as well.....and we can have a good weekend together. In the past she did spend a few weekends with us....and we had a good time...playing boardgames, watching movies, sharing a room at the Manor and going to museums in the city.

We are all packed and ready to go. Wish us luck! Once we are there...I will keep you up-to-date on Mr. T's treatment with pics.

AT LAST...VICTORY!

Mister T's last chemotherapy session was on his birthday...May 25th.....and we were sent home June 28th, 2006.

6 1/2 months later.....half a year.....193 days....finally we got to go home! In a way, I felt that I was incarcerated....and finally got my freedom. To be isolated in a hospital room for that long...I could almost imagine what it felt like to be in jail. There were times I never left the room for days. We were thrilled! We were both anxious to get back to our lives, to our home, to our beds.

Tayten was now in remission. His appetite came back quickly...he gained weight....he felt great and life was good!

He was living life to the fullest.....he went fishing & camping., had sleep-overs and his friends were over every day for bbq's and movies. His hair grew back just as thick as ever...eventually he didn't need anymore medication....and his energy for life was at full-tilt!

He was thrilled to start school in September with all his friends. Although he had missed 6 months of school the previous year...he was able to catch up to his classmates, thanks to the tutor at Cheo....and his determination not to be left behind.

Tayten did have to miss quite a few days of school as he had his monthly visits to the hospital for blood work and tests. Everything went well. He was able to participate in sports at school, and all the fund-raisers...went on school trips and forgot that he ever had cancer. He didn't even want me reminding him about the time he was sick. He just wanted to get on with life. He participated in all the community activities from dances to fishing derbies and yu-gi-oh tournaments. To see my grandson so happy just to be alive...thrilled to face each day full of energy was worth the 6 months in limbo! No, there is no place like home!

THE NEXT 6 MONTHS!

The next 6 months were really tough on my grandson. They began treating him very aggressively with chemo. Chemo is a poison. What it hopes to do is eradicate the cancer cells, but in so doing it destroys good cells as well. The first month Mister T did fine. He ate well and was hardly sick. The 2nd month..he got really sick. He then had quite a few major complications. After his 1st course of chemo, he developed typhilitis as well as acute renal failure. He required hemodialysis for his renal failure and also had status asthmaticus. Mister T develped 6 episodes of febrile neutropenia and 3 episodes of septic shock.

He went to the Intensive Care Unit once with acute renal failure and septic shock and once with febrile neutopenia causing septic shock. I rember those nights very well....I came so close to losing him. I sat by his side all night in I.C. holding his hand and praying. If I left the room for 5 minutes a nurse would come and get me, saying he's asking for me. He wanted me by his side all the time. He also had 2 episodes of influenza A. A lot of the time we spent at the hospital he was isolated in his room with me. His last chemotherapy was complicated by pneumonia which required a bronchoscopy. Tayten, my warrior recovered quite well from all of these episodes.

Everytime he received a unit of blood, I said a prayer to thank all the people who have donated blood. Without their donations, my grandson would never have made it.


During his therapy, Tayten received 38 units of packed red blood cells, 47 units of platelets and 4 units of albumin.

Many of the cancer medications have long-term side effects. Cytarabine has minimal long term side effects, but daunorubicin and mitoxantrone both have quite marked long term side effects. These 2 drugs affect the heart muscle and for this reason Tayten will need yearly echocardiograms to monitor his cardiac function. As well, he should not participate in weight lifting as this provides a sudden strain on the heart which is quite dangerous for a patient who has received these anthracyclines. The doctor explained that at this high dose of cardiac medications he may end up requiring followup by a cardiologist and potentially cardiac medications in the future. Tayten also received 'etoposide' which is associated with a 2nd malignant neoplasm with a different type of AML. As well etoposide can cause some problems with infertility. This risk is low but it is there.

It didn't take long for Mister T to lose his appetite. He got sick of the kid's menu at the hospital and would only eat if I ordered him restaurant food. Half the time he wouldn't finish it. It got really expensive after awhile....but what can you do. You have to make sure that the kids eat in order to keep up their strength...so I did whatever it took.

Many people donate to cancer foundations & hospitals every year....what they don't know is 98% of the money donated goes for research, equipment and training. Very little goes towards families in crisis. While there, I met families who had sold their homes,,,or given up their apartments and lived at Mcdonald Manor while their child was getting treatment. Many others had to give up their jobs & their savings in order to move closer to the hospital. A lot of people I met had no drug plan....and the cancer drugs are very expensive. Some months Tayten's cancer drugs came to $1500. At that time, his dad had a drug plan....now he doesn't!


I thought I was having a difficult time till I met a woman with 5 children, all girls. Her husband had to give up his job, they lost their house to the bank, and they all lived at Mcdonald Manor in order to get help for her 6 yr old daughter. So, just when you think you're having it hard....you meet someone who is having it a lot harder than you are! At least I was 3 months away from being mortgage free. Now, that's a blessing!


I will admit though...that the Children's Hospital is a great place for kids! They have Child Health Specialists (that's what they call them) and they help the kids have a fun time while they are in-hospital. They have a special room set up with a large screen t.v., all the latest movies, computers,,,and loads of arts n crafts. If your child is not in isolation, he can go from 4 to 6 each day to play with other kids or learn a new craft.



Tayten was in isolation a lot...but he did enjoy the Play Room where he made gifts for all his buddies. He made CD racks and bird-houses, jewelry boxes, etc.


He also met a lot of neat people. Stuey & Fuzzie are clowns that came to visit weekly, and Molly Penny is the hospital clown who visits kids daily. He also met a lot of Navy people who took the time to tell him wonderful stories about their travels. They told him of being at sea for many months and seeing whales and dolphins and many wonders. Of course, he wants to join the Navy when he's older and see the world.
It wasn't all fun and games. Although my grandson has a great sense of humour and energy...there were days that he wanted to give up. He was so tired of being sick...he just didn't want to live anymore. Several times he told me...that he wanted to go see his Uncle Jimmy in heaven. Some days he didn't have the energy to play games or watch television.....it was very hard to see him so sick and know that there was nothing I could do.
Although we spoiled him a lot......his uncle had bought him the latest X-box, he had a Nintendo, Gameboy, Game-cube and later a Nintendo DS....his own television set.....some days he was too sick to play a game or watch a movie.
Those days were hard to get through..I never let him see me cry...I never broke down. I just kept encouraging him....I told him that Uncle Jimmy was watching over him....but it wasn't his time to go to heaven. Uncle Jimmy wanted him to come home...to fish and camp with his buddies....to grow to be a man. I kept encouraging him to hang on.....be strong.....a little while longer! I told him that he was strong, a warrior.....that together we could beat this cancer....we would go home....he would go fishing again....and live a normal life.
I had made a deal with God when we first came to the hospital. I told God that I would go wherever he sent me without a complaint.....I would go to Timbuctoo or Alaska with Tayten .....and I would stay for as long as it took.......if only he would let me come home with my grandson. And God does listen!

THE DAY THE MUSIC DIED!

I'll never forget the date. December 19, 2005. In that past month, I must have visited the hospital at least twice a week, every week. My grandson was not feeling well. Tayten was tired all the time...he had no energy, lost his appetite...and for him...that's very strange. He was a healthy boy who never got sick....and ate like a horse. To top it off, he started having nose-bleeds. Of course, I blamed it on a dry house heated by wood and oil. Still, I was worried. One day the school called to say that as soon as he entered the building he fainted. I didn't know what to think. I thought maybe coming in from the cold into a warm school? Rough-housing with friends? But fainting?? I rushed him to the hospital of course...and then began a series of visits that ended up with the same results.

The nose bleeds really scared me.....a normal person can stop a nose bleed within 3 to 5 minutes, but he had stubborn nose-bleeds and bled for 20 minutes or more. Hours of waiting and finally we would see a Dr. The doctor would look at his file and see that he had asthma and read what the previous doctor had said and repeated the same advice. 'Keep doing what you're doing...give him his puffer every 4 hours and keep a humidifier in his room'. Each & every time I left the hospital frustrated. On 2 occasions they burned his nostrils to cauterize the nerves...without freezing him.

One day he woke up with a bad nosebleed....this nosebleed was very stubborn....it refused to stop. His pillowcase was covered with blood and so was his sheets. He had dripped all over the floor to the bathroom...there was blood everywhere....on the tile, in the sink, on towels. I had enough!

We headed for the hospital. When I got there, a Dr. who was visiting noticed me. He said, "I only work on weekends, and I notice that you come here regularly with your grandson.....what's the problem? He looks like a fine, healthy young man!" Finally someone cared enough to ask??.....I told him that for several months now my grandson had nosebleeds that wouldn't stop, felt weak, loss of appetite, etc. Dr. Zaroukian said....."that's not normal.....let's do some tests."

He did some blood tests, and told me it would take awhile...so I could go home and have lunch and he would call me. I live 15 minutes from the hospital. I didn't get in the door to take off my coat, and the phone rang. The doctor said that a mistake was done in the lab and they needed to do more blood tests. Frustrated, we turned around and headed back to the hospital where he took more tests. Knowing it was past noon and we hadn't eaten all day, he suggested we go ahead home and he would let us know.

Exhausted and hungry we got home and there was a message on my phone. Please come back to the hospital....we have to do more blood tests. Well, at that time......I was more than frustrated. I actually called the doctor back and asked him angrily..."what kind of idiots do you have working there? Can't they even do a blood test right?"

He of course, apologized profusely. So back we went again. No, the idiots did the lab tests right. When the doctor saw the results of the test, he just couldn't believe his eyes....so he had me come back several times just to be sure!

He took me into a small room and asked me if I ever heard of Leukemia? I said of course, it's cancer......and then he proceeded to talk about my grandson's blood results and his platelet count and neutro-polys and the room was spinning.....and all I could say was "No..this can't be....except for the nosebleeds my grandson is a healthy boy! This can't be happening!"

But it was and it did! He advised me that my grandson had Leukemia and we didn't have much time......that I wasn't to go home...that I must rush...right now......right away... to the Children's Hospital. He had already called them.....they were expecting me! Dr. Zaroukian scared the crap out of me......you could see the worried look on his face!

I don't know how I got to my son's.......I don't remember driving, but I did! I had to go see my son in order for him to drive me to Ottawa...I remember him saying......'Mom, you've got to be kidding' and without another word he rushed us to Ottawa.

My grandson kept asking me what's wrong?.....and I kept saying...you keep having nosebleeds.....so they will do further tests to make sure you don't have these nosebleeds anymore. I thought for sure a big mistake was made.....after all the hospital I was at is a small hospital in our area........I was sure that in Ottawa at a big hospital....they would find a mistake was made...and we could go back home. Surely.....this was was just a big mistake!


When we got to the Hospital........sure enough there was a team from the Oncology clinic waiting for us......and rushed us through admitting. I don't remember much about the 1st 3 days......I know I met a lot of people.....my grandson had a lot of tests done but everything was hazy....I met doctors and specialists, social workers, anesthesiologists, etc......and they all talked at me and over me......with words that eventually would become commonplace but at that time I had no idea what they were talking about. AML and Leukemia, platelets, neutro-polys, chemotherapy, blasts and everyone seemed to have some kind of literature for me to read. They gave me books and pamphlets and print-outs and blood work.....I had stacks of reading material.....everyone I met shoved more information into my hands........and I couldn't understand diddly-squat. I just new the lights went out and the music died......and for quite awhile I was running on empty!